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Shirley, You ever throw a light switch? That's what on-off feels like. At least for me. It is not a gradual thing. One minute I can be literally nimble as a gymanst. The next slow and cumbersome. It's like a roller-coaster ride all day long. The worst part is that your moods run the same cycle. How did your neuro decide you don't have PD? Did he come up with something else? Do you respond to sinemet? Greg 47/35/35 :) > ** Original Subject: Re: Rating scales. Was: Long term prognosis > ** Original Sender: Edward Kleinmeyer <[log in to unmask]> > ** Original Date: Wed, 8 Mar 2000 10:30:30 -0500 > ** Original Message follows... > > I agree with Greg. The mood swings are so bad,but according to this neuro I > have been going to I don't have PD. I don't understand his thinking. If a > large amount of symptoms are there then what is going on?? Can some one > explain (on-off) and is there a certain amount of time or is it different > for everyone? Shirley > ----------------------------------------------------- > Click here for Free Video!! > http://www.gohip.com/freevideo/ > > ----- Original Message -----From: Chris van der Linden <[log in to unmask]> > To: <[log in to unmask]> > Sent: Wednesday, March 08, 2000 6:49 AM > Subject: Re: Rating scales. Was: Long term prognosis > > > > > > > Dear Rita and others, > > > > As a movement disorder specialist I know the impact on daily living for > > Parkinson patients very well. > > However, to use a scale to score this impact is not easy and therefore > > conventional scales are used. As a matter of fact the Hoehn and Yahr scale > > and the Schwab and England scale are more than 35 years old and still > being > > used, which tells you something about the difficulty of creating a newer > > scale. Scales are usually designed by the physicians for research > purposes > > and should therefore be very objective. A scale measuring the impact on > > life has many subjective features and therefore not used by clinicians. > As > > a matter of fact they may not even be interested in such a scale. It would > > be wondeful, considering the extensive use of the internet, that patients > > should come up with suggestions to create a scale for themselves to be > able > > to give other fellow patients an idea on their condition and to have an > idea > > of the condition of the person they are "chatting" with. > > Anybody interested?? > > > > Best regards, > > > > Dr. Chris van der Linden > > > > I think it does prevent all but the "most open minded" neuro's from > > > comprehending the impact of the PD on daily/family living. I have also > > > suggested a questionaire for the Carepartner that could be a checklist > > > completed in the waiting room (most of us have plenty of time > > > there!)....which could be helpful in the evaluation/suggestion/ > > > modification/communication of treatment/medication. > > > > > > The other thing I notice is that as we "accept" the limitations of the > > > progression of PD, the answers to some of the questions on the UPDRS > > improve. > > > What bothered me in the beginning, may seem insignificant now in the > > realm > > > of everyday living and frustrations. Also my "mood" when I am asked > these > > > questions may vary.........if I am "on", I will answer one > way..........if > > I > > > am "off", I will usually give a more positive answer. This seems a bit > > > different than one might anticipate....but when I am "off" I do not want > > to > > > talk, elaborate, define, think.........so therefore give the answer that > > will > > > require the least followup information from me. > > > > > > So, how do we ever get the medical community to hear our requests for an > > > updated version of an old problem.........? > > > > > > Rita Weeks 55/10 > > > >** --------- End Original Message ----------- ** >